I've been back in town now for a few days and feeling a little lost. I spent so much of the last couple of months focusing on preparing for the New York trip that I'm not sure where to channel that planning energy anymore.
So many people would love to not have to work! And I know that's a huge privilege in my life that I'm in this position where I don't have to worry (for now while my parents are alive and still working). But I miss it so much! I don't know what to do with myself every day. Going to so many appointments feels like a job, and takes up a lot of time. But it's not the same as channeling my energy into a creative and/or professional endeavor. I'm only 45 years old! In my prime. I've lost so many years of working that I don't know where I'd be now if I'd been healthy since 2010. But I know it would be have been exciting and challenging in some way.
Everyone around me is busy with their own lives, so busy, overfilled schedule. Strangely, I have a lot going on despite having few obligations. My family always has something or another going on. We've been installing a bathtub so that I can take my baths at night to help with pain and hydration issues.
Still. It's not the same as living on my own and having my own life. Perhaps being in New York reminded me of what I lost. I was able to stay in a lovely friend's apartment which was such a treat. I picked up groceries around the corner, saw old students and friends. Walked in Central Park.
I felt like a normal person for just a moment.
It was both wonderful and incredibly sad.
I'm sure it doesn't help that our government is such a disaster and I have to read daily about how our health care system is getting worse. I've barely been able to find the specialists I need NOW. What will it be like in a year? Two years?
I haven't written much about what it's like to live with my parents at this point in my life. They are super cool and they live in a beautiful area. I have basically a 3-bedroom apartment to myself in their downstairs which is bigger than anywhere I've lived in years!
But it's still not where I want to be. I know how lucky I am so I hate to complain about it. But I've always been naturally very independent so this doesn't feel "right." I was never that kid that got homesick. I was the kid that couldn't wait to start adult life and be on my own.
None of this feels "right."
A lot of days, I manage to hold the frustration at bay. I try not to spend too much time thinking about my situation or how fucked up everything is with my health. But last night, it was hitting me hard.
What do I do now?
What do I look forward to?
How do I create a new life in this body that only partially works?
Perhaps I should look up classes for the summer. I love being a student. And never had time to be one when I was so busy being a teacher. I need to find ways to feel like this time is a GIFT instead of a prison sentence. Explore the world as a non-working human. Tackle art projects. Join a support group perhaps - even though I never know which one to attend because I don't fit into any neat little cancer categories. Make new friends in Seattle. Maybe learn how to garden - finally!
I'll figure it out. I always do. But this has definitely been a heavy let-down. I think I need to plan another trip. I'd like to get to doctors at Johns Hopkins which specializes in weird cases. I could also do some lobbying while I'm there. I will have to wait until the hot summer months are over though so I know that will be far off.
For now, I'll keep plugging away. It's a work in progress, shifting into a new mind set, accepting this body of mine.
I don't know how I will do this.
But I know I will have to. I refuse to give up. So this is all I'm left with.
I can do this.